Yesterday I met for the first time another person affected by Parkinson’s, who has been diagnosed longer than I have. She seemed so together and – while she acknowledged her challenges in life – talked about living in the moment and not worrying about what will happen in the future so much.
I wish I could be more like that. I try every day to live my life and appreciate the good things in it and there are many. I am grateful for my husband, my children, my grandchildren and for my friends. There is a lot of good in my life, but I feel the shadow of this thing I call ‘Parkies’ constantly. I am still adjusting – after all, it’s only been a few months – and some days, like today, I struggle with the uncertainty of life. The lack of control over my future is hard. I know even without a diagnosis none of us can necessarily predict what the future will hold, but I feel deeply at times the uncertainty of how I will live my life and what choices I will need to make.
Most of the time, people say that I am ‘amazing, brave, coping so well’ and outwardly and usually I am. But there are times – like today – when I cry, when I struggle with decisions that will affect my future. When I wonder what is best? They say time is a healer and I hope that is true. I have suffered a lot of loss and grief these past few months – not just due to my diagnosis – and it is natural that I cry sometimes. I know that can make me hard to live with, but holding it all together and resisting my tears is not good for me either.
I need an outlet to talk about how I feel. I know that if I don’t talk things through when I am worrying about ‘stuff’ things get worse for me. Bottling things up could lead to the slippery slope of depression and that’s the last thing I want.
So, while I will try my best to live in the moment and be positive, sometimes I need to acknowledge that this new life with Parkies is hard, bloody hard and by acknowledging it and accepting the reality of that, maybe I can start to move forward.
My journey with Parkinsons 