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In what ways has Parkinson’s changed your relationships with your loved ones?


Community Answers

  1. KellyW moderator says:

    Communication seems, to me, to be one of the hardest parts of having a chronic disease. Everyone in my life wants a different level of level of information. Some want to know on a daily basis how I feel and if anything has changed. Others only want to know when something has changed and if they should be concerned. Others ask, but they really only want the answer that everything is fine and are not interested in the details.

    My levels of communication also differ depending on who I am speaking to. For the most part, I keep the disease to myself. It’s not that I mind sharing, it’s just (as i said above) most people just want to hear that I am fine. Going beyond that makes them nervous. I mainly share the nitty gritty with my friends with Parkinson’s that I met through support groups. We laugh about symptoms that are not really funny, we share coping skills and we understand that we are not alone.

    With my husband, we did not want Parkinson’s to define our relationship. As I mentioned in a separate post in this thread, we learned a lot about communication through attending support groups together. And, after going through a particularly rough patch, we found that our relationship had to shift from husband and wife to care partners. We still do not talk about it daily or even weekly, but my husband has become much more involved in my care and health related decisions.

    It works for us but it took effort on both of our parts to face the many faces of Parkinson’s.

    Regards, Kelly, ParkinsonsDisease.net Team Member

  2. rqfenn says:

    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

  3. KellyW moderator says:

    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

  4. ElkMagik says:

    There is little or no communications.

  5. lovetobake says:

    I feel like my husband does not want to understand. He does not want to talk about it. I think he is afraid.

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