This is tough for me. I love the life I share with my husband but also need something more at times. I recognize that my outside activities and interests bring more to our relationship, but I also struggle with feelings of guilt for doing things without him. I find myself not doing things that I want to do, things we would have done together pre-PD. I am letting my husband’s disease create limitations on my activities. Instead of going ahead with my life and bringing the experiences home to share with him, my guilt denies that opportunity for both of us.

We just returned from a trip to the beach. I enjoy walking along the shore watching the birds and listening to the surf. My husband can join me for short walks but a sandy beach is difficult and wears him out quickly. Even our Nordic sticks can’t offer much support in that environment. On this last trip, the closest I got to the beach was a brief period on a bluff overlooking the sea. We took a nature walk on a trail that led to the beach, but only made it about halfway before he needed to rest so we turned back.

How do I break through my self-imposed guilt barrier to open the conversation? In the example above, I tried suggesting alternatives to my husband but he didn’t want to sit in the car while I walked on the beach and not all beach access is handicap accessible. If I am walking, he wants to be walking too, I get it. So, rather than argue the point, I just didn’t go.

I know that my husband is not intentionally stopping me from doing things, I am doing it to myself out of a misplaced sense of guilt. I am not sure what the answer is going to be, but I do know that we need to have an honest and open conversation about this issue. If I can only figure out how to get it started.