My grandmother had Parkinson's, I have only just found out. My parents hid her in a home, were embarrassed by her decline, her social unacceptability, her appearance, her confusion. I remember being told that I couldn't visit because it wasn't appropriate (what did that even mean?). Her death was met with little comment that I can remember (though I think I had just discovered boys so ....)
Yesterday, I was listening to work colleagues talking about Parkinson's, they had forgotten I was there, or had temporarily forgotten all the platitudes they'd heaped my way when I 'fessed up' to my declining sate, my 'guilty secret', my shame. I won't repeat their comments but suffice to say that at some point they noticed me - not a comfortable experience for any of us. I'm debating staying at home today; I don't know if I can keep on pretending not to notice them pretending not to notice my tremor. It bothers some of them. A lot.
Last week I was in a restaurant. A family turned up with a relative who obviously had advancing Parkinson's. Several people were visibly bothered by her presence - she 'ruined' their lunch (toilet conversation); they either stared in horrified fascination or forcibly averted their gaze. The waitress was pretty cool though.
A Parkinson's friendly society? We've got a long way to go. I don't think 'Why me?' (why not me?) but I'm truly embarrassed to admit that I find myself asking 'Why this?' and wishing I could trade with something more socially acceptable. Utterly, utterly ridiculous (a pity party - I know) but it's stupid o'clock in the morning and it's bothering me so I figured I'd try writing it down - might even get a couple of hours sleep before I get up and decide whether or not to head to work - I really, really hate Parkinson's :(. J