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    • #14554
      Ally
      Keymaster

      Do you ever feel guilty about having Parkinson’s disease because of how it has impacted people close to you, like your spouse, children and friends? Have you ever talked about these feelings with someone – a trusted confidante or a mental health professional?

    • #14559
      Marcus Sutherland
      Participant

      Yes I do, I’ve always been very independent. My family takes care of the lawn and car repairs now it’s much harder on them. Sunday someone at church said I looked normal he said he knew people with Parkinson’s and I didn’t look like it that made me feel even more guilt!

      • #14564
        Jean Mellano
        Keymaster

        people always tell me i dont look like i have PD as well.  we must be doing something right Marcus…

      • #14654
        Ally
        Keymaster

        Oh, I hate when people say stuff like that! As the saying goes, you can’t judge a book by its cover and not everyone with the same disease (especially PD!) will look the same outwardly. Ugh what a silly comment!

        I have a friend who lives with pulmonary fibrosis. She’s young (31) and vibrant looking, but she struggles to breathe every day. She’s encountered similar insensitive comments and even worries about how people might perceive her when she’s out and about with her portable oxygen.

        It’s enough to have to live with a chronic illness; no one should have to worry about other people judging them and thinking they don’t look “sick enough”. 🙁

    • #14643
      Lou Hevly
      Participant

      This is a good point and one that should be talked about more. In my case, my wife is retiring in 3-5 years and the grand desire of her whole life and (here I exaggerate a bit) the only thing that keeps her going is thinking about all the traveling she’ll soon be doing. But, uh-oh! Now her husband has Parkinson’s. What’s he going to be like 3-5 years down the line? Will she have to give up her life’s dream to care for a cranky old codger? Also, would she worry about what our friends would say if she left me “in care” and went traveling?

      This possibility really upsets me. Of course there’s no way of knowing what I’ll be like in 3-5 years; maybe I’ll still be able to live on my own. But if this ability were marginal, I might say “Go ahead, I’ll be fine!”, leaving her exposed to possible guilt feelings if something unexpected happened to me.

      I think the best solution would be an outside care-giver, if we could afford it. I’d be interested to hear other people’s thoughts.

      • #14655
        Ally
        Keymaster

        Have you and your wife talked about this, Lou?

        • #14657
          Lou Hevly
          Participant

          Indeed! She’s royally peeved, but there’s nothing we can do but wait and see.

    • #14649
      Jean Mellano
      Keymaster

      Interesting perspective Lou, I am coming from a very different place than you.  My life partner passed in 2015, 6 months prior to my PD diagnosis.  So, it is just me now and I made the decision to move to a CCRC (continuing care retirement community).  I live independently now, but have access to assisted living and rehab housing should I need it.  So I never was in a position where my significant other would have to be my caregiver.  It is a tough call… you have no idea what PD has in store for you down the line.  My impractical side says live in the moment and act like you dont have PD, my practical side says plan ahead for your future.  Maybe you can find a happy medium.

      • #14658
        Lou Hevly
        Participant

        I’m with your impractical side, my wife’s with your practical.

        • #14659
          Jean Mellano
          Keymaster

          As my late life partner would say… “The Beauty is in the Balance”

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