I am part way through writing a novel and somehow just don't seem to have the required time to dedicate to this half finished project. I hate leaving things half done, or not completed as they should be - it's not in my nature. I am kept so busy with writing regarding advocating Gaucher and Parkinson's disease that I sometimes wonder if I'll ever finish my novel. Here's a strange thought; imagine leaving this world with a written piece of work unfinished! I would have to come back as a ghost to finish what I started - which brings a new meaning to the term 'ghost writer'! But seriously I have no intention of going anywhere, I've simply got too much left to do.
Parkinson's is a journey of self discovery, and although I am fundamentally still "me", I have changed in so many ways. I am not just talking about my shuffling gait, or inability to participate in certain activities, or the "masking" that hides all signs of emotion, but on a much deeper level. In a sense, as absurd as it may sound, Parkinson's has set me free in an emotional sense. When I realised soon after diagnosis how many patients "hide in the closet" from denial or simply fear of the unknown and what lays head of them, I knew this is where I could make a difference and stepping up to the mark, I have made it my mission to inform and educate those who know nothing about Parkinson's and to offer support to fellow sufferers in need. I also found quite quickly how the role of caregiver is one of the hardest jobs and often not acknowledged; unless you've been in these shoes, and I've played the part of caregiver to my late mother and now find myself in the position of being taken care of by my husband and daughter. I have come across many people in my generation who in similar circumstances have experienced both roles as carer and then later as patient.