I have just been reading a short article written by someone who has a diagnosis of cancer and now only has weeks to live. She is so brave sharing her story and I have to admire how accepting she is of her prognosis. She is doing things like knitting her nephews rugs, so that they have something that has been made with love from her. She is an inspiration.
Her situation made me think about my situation and that of others who have a diagnosis of Parkinson’s. I have often been reminded – when speaking to those who have friends or loved ones with Cancer – that they are facing their mortality much earlier than most of us are.
I have read many articles in which they say that Parkinson’s is not necessarily ‘life limiting’ in that people usually die with Parkinson’s not from Parkinson’s. Those two words I just used – ‘life limiting’ – can be looked at in a number of ways. It can mean that you still may have the same amount of years on this earth, it is just that the journey of those years may get tough along the way. The other way I look at it is this. We as people with Parkinson’s can allow Parkinson’s to be ‘life limiting’ in that we can give into it and be fatalistic and not challenge it’s hold on us. It can mean that we give up trying to live the best life we can and just exist, with no plans, no hopes and no dreams. Living a limited life, because we have given up.
I for one do not intend to limit my life in such a way. I will go on trips overseas sooner rather than later, while I know I am able to do so. To spend time with family in a more deliberate way, so that we build memories together. I want my grandchildren to have happy memories of time spent with me. That I am remembered as ‘the Nanna who baked’ or ‘the Nanna who wrote poems’ or will wear an Oodie with them or a onesie and be silly. The fun Nanna. Those are labels I welcome and cherish. If I do not put all the focus on my Parkinson’s when I am with them, then it can take a back seat and hopefully the first thing they might say about me in the future will not be that I am ‘the Nanna with Parkinson’s’ because we’ve not made it what I am all about.
I feel we owe it to ourselves and those who love us to grab life and make it the best life we can. To not allow Parkinson’s to rob us of joy. To not allow it to keep us down and to move through life just waiting for it’s next move.
I choose to live as full a life as I can. Sure, there will be adjustments along the way, but doesn’t everyone have to make adjustments as they age? Nothing in life is a certainty. Not how long we will live or what that life will ultimately look like. What is a certainty though, is that if we don’t take charge of our lives and challenge our condition it will win and we will end up living a ‘limited life’.
I choose not to focus on any limitations I have, but to celebrate what I can still do and even try new things. The time to take charge of life is now. I’m sure not allowing Parkies to take over.
No. I will grab life and find the magic wherever I can and by doing so, I hope to bring a little magic into the lives of those I love.
Move over Parkies.
I’m in charge here…
My journey with Parkinsons 
PI love your attitude toward this horrible thing called Parkinsons. I like you, will not let it define who I am and what I can do. We have not long ago been on a caravan trip up to Yulara (Ayers Rock). It’s got to be about the mindset. I do have down days,but that’s allowed.
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Thank you for reading my blog. I hope it helps you as much as writing it helps me. I do have to focus on the positives, because if I focussed on the ‘what if’s’ I would be doing nothing positive for myself and lose all hope. I for one cannot afford to do that. We all have days where life gets to us. At times like that it is good to just meet them head on, acknowledge that today maybe things are crap and do our best to fight our way out of a negative head space.
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