I want people to understand that this disease will progress as it is going to and while some behaviours might help, I can’t fight it or stop it progressing. I suppose I would like people to understand that, like many chronic conditions, it is a life sentence that you learn to live with as best as you can. I want people to understand how desperately I would like a day off from it and how my heart sinks on the rare occasions that I sleep and when after a few moments of waking ignorance, I realise that it is still there - that there will never be another day when it is not there.
I don’t want to be represented as a fighter who is determined to beat this thing, it’s not realistic. I would like people to know that I reluctantly exist alongside it and manage it as best as I can and that I don’t deserve praise because, at the moment, things are progressing quite slowly - I don’t think I’m doing anything differently to so many people whose Parkinson’s is progressing more rapidly. I think it does what it does and I don’t want praise when things are going well because the flip side is criticism when things are tough and I’m not doing so well. I can’t prevent things getting tough because they will at some point irrespective of what I do to try and stop this happening and I want people to understand this without judging me because in spite of the rhetoric, I am not in control of Parkinson’s and I cannot be in control of it because I don’t know what it’s going to do or when; I cannot stop it and I cannot slow it down; I can only control how I live within the confines of its impact.
It’s not about pity or comparisons with other conditions that are deemed to be easier or harder to live with ( it’s not Top Trumps :-S ). I think it’s about raising awareness instead of raising expectations or unintentionally encouraging judgementalism.
Hmmmmm - I’m not sure this actually makes sense :-S