In what ways has Parkinson's changed your relationships with your loved ones?
Less communication.
I feel like my husband does not want to understand. He does not want to talk about it. I think he is afraid.
There is little or no communications.
shifts our partnership from a simple 1 to1 to a more complex combination of dependency and open communication balancing PD related activities with the way life was before PD
Hi rqfenn! I completely understand how you describe your relationship. My husband and I met a few years after I was diagnosed. In the beginning, we discussed what life could look like with Parkinson's (I was diagnosed at 29). Over the years, unless there was a need, we talked less and less about it. We did not want it to define our relationship.
I started a young onset support group and he would attend with me. For the first time since diagnosis, I felt very open to speak about my disease because I was with others who were in a similar place. He also benefited from talking to other spouses/care partners. After one of the meetings, he told me he didn't realize that things were changing with me and that my disease was progressing. It was eye opening for both of us.
I went through a very rough time for about a year and my relationship with my husband changed quite dramatically. He quickly had to become my caregiver. It did, as you say, make our relationship much more complex. As things improved with me, our relationship started to shift from caregiver to carepartner. And that is where we remain. I feel it is a good place. We still don't talk daily about Parkinson's but he has become much more involved with my care and health related decisions.
It has helped us to do as many activities that make us feel like a "normal" couple. We have planned trips that I may not be able to do later in life.
Parkinson's has definitely dealt us a full hand but we have tried our best to work through it.
Thanks for sharing your perspective! Regards, Kelly, ParkinsonsDisease.net Team Member
