I’m confused. I’ve been reading the website (in an effort to stay informed) and I keep reading about people ‘affected’ by Parkinson’s but I don’t really know what it means. Maybe I’ve missed something, or maybe I’m just being characteristically grumpy :-[, but if this includes me, I really don’t like being described as somebody who is ‘affected’ by Parkinson’s in the same way that my friend or sister or my upstairs neighbour who sometimes carries my shopping in for me are affected.
My parents have both had a stroke; I can offer a lot in terms of sharing experiences of caring for somebody who’s had a stroke and adjusting to the changes that can occur in somebody following a stroke but I have no idea what it’s like to have a stroke. I don’t class myself and my parents as equally affected by the experience of having a stroke any more than I consider myself affected in the same way by cancer as my friend who has an infinitely more personal relationship with it. I tried to refer to her as somebody ‘affected’ by cancer just to see what would happen - suffice to say the result wasn’t pretty :-S
Apparently the new ‘movement for change’ being embarked on by the ‘Parkinson’s Community’ is going to unite people affected by Parkinson’s. These people are listed as: ‘scientists and supporters, fundraisers and families, carers and clinicians.’ They are ‘working, side by side, to improve the lives of everyone affected by Parkinson’s’. Hmmmm, people who have Parkinson’s don’t seem to be part of the new 'movement for change '. Or maybe mentioning people who have Parkinson’s as any differently affected than anybody who has any contact with them at all is no longer permitted for fear of suggesting that the impact is any greater on people living with it than the people they ‘affect’.
I wrote and asked who was classed as being ‘affected’ by Parkinson’s. Now I am genuinely grateful for the endless patience shown by all the people at PUK who answer my many, many queries [most of which seem ridiculously important at 2 in the morning but a little random in the cold light of day] but the answer confused me even more because apparently people ‘affected’ means ‘someone who is closely connected to that person and who may be a partner, sibling, carer, or other family member, and whose life is directly affected by the condition too’.
I’m not saying that Parkinson’s does not have an impact on the lives of all the people mentioned but I’m feeling pretty invisible right now and I guess I’m wondering where the role is for people who have Parkinson’s moving forwards. And if the impact of my Parkinson’s is to be measured mainly by the impact it has on my friends and family, then I guess I am little more than an inconvenient expense because I live alone and tend to lack the prerequisite extensive support network that I was supposed to acquire along with the Parkinson’s.
I don’t know, maybe I’ll go and work on not overthinking things, and also on being a little less grumpy. Maybe it’s being ‘affected’ by Parkinson’s that makes me grumpy :-S. :-Z :- ( Jx